For immediate release: Ottawa group advocates for awareness of rare disease, acromegaly

OTTAWA – October 28, 2019 – November 1st is recognized internationally as World Acromegaly Day, and the Acromegaly Ottawa Awareness & Support Network (AOASN) is out to spread the word. The AOASN is a registered non-profit organization that promotes awareness about this rare, life-changing diagnosis, unites patients and their families, as well as advocates for patients’ rights and swift diagnosis.

What is acromegaly?
Acromegaly is a rare, serious condition most commonly caused by a non-cancerous tumour on the pituitary gland. The tumour causes the gland to over-produce growth hormone, resulting in symptoms such as enlargement of internal organs, hands, feet, and jaw, and other conditions like diabetes. There are approximately 2,000 diagnosed cases of acromegaly in Canada, with the possibility of many more suffering without a name for their illness.

About the Acromegaly Ottawa Awareness & Support Network
The AOASN was founded in 2018 by Ottawa resident Dianne Sauvé, an acromegaly patient herself, after realizing that local resources for this disease were almost non-existent.

“Those in Ottawa diagnosed with cancer or diabetes have support groups and a plethora of resources at their fingertips to get them through a scary and difficult time,” says Sauvé. “Most physicians never encounter a case of acromegaly and patient resources are extremely limited. One goal of Acromegaly Ottawa is to help those who feel isolated with this rare condition.”

One of the main objectives of the AOASN is to educate the medical community in Ottawa about acromegaly. The average time to reach a diagnosis is seven to ten years. This is due to several factors such as limited coverage of acromegaly in medical school, and the disease’s wide-ranging symptoms affecting many bodily systems, often ascribed to more common conditions. A fast, simple, and affordable blood test (IGF-1) can help confirm a diagnosis of acromegaly.

Since its founding in 2018, the AOASN’s Facebook group has grown to more than 60 members, many of whom had never met another person with the same diagnosis. In the closed group, patients and their friends and families can discuss their experiences and share information and resources. The public Facebook page promotes their advocacy activities, events, and news, and can be followed by anyone.

The group hosts quarterly in-person meetings and social gatherings, and outreach activities at local venues. Coming in March 2020, the AOASN will host an exhibit at the Shenkman Arts Centre in Orleans, by group member and photographer Santino Matrundola. The exhibit, called “Light of Day,” features portraits of acromegaly patients and explores the patient perspective and experience. Media are invited to attend. RSVP HERE.

Dianne Sauvé and other board members of the AOASN are available for interviews in-person or by phone.

Helpful links:

 


Media contact

Angie Sauvé
angie@quirkcomms.com
613-868-8299

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